Living with Multiple Sclerosis - Is this the MS Hug?

  Рет қаралды 4,951

Lauren Parrott

Lauren Parrott

4 жыл бұрын

I'm not sure if what I experienced was the MS Hug. Do you have any insight into the situation? Thanks!

Пікірлер: 76
@FintaruS
@FintaruS 4 жыл бұрын
So good to hear from you again 😊
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Thank you Kim!!
@EngineerCorner
@EngineerCorner 4 жыл бұрын
I love your videos. I never talk about my MS with family or friends. It's nice to know I'm not alone in this journey. Thanks for the great video. Keep them coming! :)
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hey!! Thanks for your comment! I really appreciate it! I hope you are well!!
@adamdelarozza1985
@adamdelarozza1985 4 жыл бұрын
Lauren, you look Beautiful this year! Happy 2020 !😎
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hey Adam! Thank you so much!! Happy 2020!
@richardwilliams4689
@richardwilliams4689 4 жыл бұрын
Thank you for sharing. God Bless.
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Richard! Thanks for writing! God Bless!!
@parallel-galaxy
@parallel-galaxy Жыл бұрын
For me personally, this particular symptom is hands-down the #1 Most distressing, uncomfortable, and nefarious of symptoms (of many) that I experience w/ MS. In my personal journey with the MS hug, it's not just a singular sensation of feeling like I'm being squeezed. And most specifically, my MS hugs have evolved to the point where there's a tendency for this symptom to encompass the entire area from just below the clavicle, down to my groin area. As the 'episode' intensifies, it get's to the point where I almost feel like I'm going to explode. The best way to describe it is the sensation that my entire chest and mid section is expanding to the point of bursting. Much like what happens when you fill a balloon with too much helium. And this sounds silly, but I become instinctually driven to remove clothing in the attempts to relieve pressure. 1. The chest pain unto itself is terrifying. And I've lost count how many times the Doctors have ordered chest x-rays, EKG's/ECG's, Troponin blood tests (a blood test used to see if you've had a heart attack), CT scans, etc. It got to the point where I told them, " My EKG/ECG is going to be normal. My Troponin levels are going to be unremarkable, and If you guy's give me one more chest x-ray and ct scan I'm going to become radio active." 2. My MS hug episodes will peak. And at this peak of any given episode I'll start getting intense pinching electrical shock sensations throughout various parts of my body. They're so startling and painful that it takes my breath away. Compared to the feeling of getting the wind knocked out of you. Complete w/ dizziness, near syncope, and my leg buckling at the knee. 3. I start getting cognitively confused and unable to concentrate. 4. The epic pins and needles sensation starts creeping in and spreading. And although it's an almost constant symptom of mine with MS = During an MS Hug episode in particular, it Intensifies. Frankly, during an MS Hug episode, labeling it 'Pins and needles' puts it mildly. It's more comparable to the velocity of a torrential down pour of rain impacting the ground (or your car windshield). It stings. One day during an MS hug episode, I literally felt it creep up from the front base of my neck up to (and around) the underneath of my chin and head. Followed by numbness. Again, It's hands down the most insidious sensation I've ever had the misfortune to endure. 5. You intuitively understand that it's ravaging your body.
@LaurenParrott
@LaurenParrott Жыл бұрын
Thank you for your descriptive response! This has only happened to me a few times, but now I inderstand what to expect. I wish you the very best with everything!!
@jacih1034
@jacih1034 4 жыл бұрын
Rest and just taking it easy is what I found to help me. It scares me whenever it happens. I am now just getting over a bout of the flu that had tremendous effects on my respiratory system. In the middle of that “the hug” decided to pay a visit. It just a feeling for me of being held really tight around my abdomen.... have a bit of trouble breathing.I just slow down and took it easy. My hubby is a godsend and ordered me to R E S T! Thank you for this channel. It is nice to communicate with someone who is experiencing life as I know it.
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hey Jaci! Yes, rest definitely helps!! Oh gosh, I'm sorry you got the flu, and you also had "the hug" on top of it. It sounds like your hubby is awesome! So understanding of your condition! I wish you the very best with everything!!
@jacih1034
@jacih1034 4 жыл бұрын
Lauren thank you for the response. My flu is almost gone. My friend the hulk hug left for now ( hoorah!). My hope for me this year is to make most of my life journey. Yours and others who bravely share their life journey with MS have greatly helped with knowing that I am not the only one. I am like you, I keep to myself when my journey is thrown a loop. My hubby is my rock, my crutch, my crossing the street when I forget my cane. He gets me, he knows most the time when I am not doing so good. I am most lucky. Thank you Lauren, thank you for your videos. May the light of the sun and the stars shine down upon you and keep you safe and keep you going through their wonderful light.
@Gabriellabonanno
@Gabriellabonanno 3 жыл бұрын
Beautiful woman....sending prayers
@LaurenParrott
@LaurenParrott 3 жыл бұрын
Thank you so much!
@angiemurphy2119
@angiemurphy2119 4 жыл бұрын
Wow I am so happy I came across this. I have had ms for twenty years. We iam off work right now. Because yes I experienced the ms hug twice now and it was everything you said. Except mine would last for 3 to 4 hours very scary. Then it's like did that really happen. Crazy my speech was all messed up. So thank for your story.
@SeleBear
@SeleBear 4 жыл бұрын
So sorry Lauren you had this flare up. I have had the ‘M.S HUG’ several times before.... it is very much like a tight corset which restricts the full expansion of your rib/chest muscles. It is very uncomfortable and in some cases painful. For me it limited my torso mobility and made it harder to breath - I have asthma but this MS HUG is different. It is very much as ‘named’ like someone is squeezing me in a bear hug just around the abdominal area & rib cage and not letting go. I tend to take muscle relaxers and get more sleep and rest. I know of someone with M.S who had the Hug for months 🥺. Take care of yourself and I hope it passes quickly. Regards Selena 💛
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Selena! Thank you for your comment! It's nice to know that others have experienced this! I wish you the best with everything!
@deecats5768
@deecats5768 4 жыл бұрын
I thought you covered this topic before, I'm almost certained you did in the past.
@LaurenParrott
@LaurenParrott 4 жыл бұрын
I'm not sure if I have covered this before?
@sherokpazoor
@sherokpazoor 4 жыл бұрын
Hi loren Im a ms sufferer & using a wheelchair. I need your advise " how can i get off the wheelchair & walk. The symptoms that stop me from walking :(1) no balance (2)stiffness (3)unable to lift my foot & take steeps. I dont know how to get my balance I do take backlofen to reduce stiffness but taking higher doses involuntary beñds my knees. And lastly i dont what to do to take steeps. If you could advise me something or recommend me something that could change my life and make me walking again Regards
@MSman77
@MSman77 4 жыл бұрын
Hi Lauren how are you ? How you doing with Ocrevus? Hope you’re OK 🌷
@michellel1116
@michellel1116 4 жыл бұрын
Hey! I have never felt it before but it could just have been a fluke - I mean who knows, but if it went away quickly, it was probably just short breath! You look so great! Do you mind if I ask what age you were diagnosed? I got diagnosed the day before my 25th birthday and I have had it for about a year!
@meganhenry5795
@meganhenry5795 4 жыл бұрын
Lauren! You are so beautiful girl!! I'm in the diagnosis process right now. Not sure what is going on with me. It's pretty scary when you feel like your body is turning on you.
@gibbynj3002
@gibbynj3002 4 жыл бұрын
Yes, it sounds like it was "The MS Hug". I've had that symptom and others for the past few days. I found this video because I was looking around on KZfaq for others that may have had the same symptoms. On my way to the ER, I usually can deal with my symptoms, I was diagnosed 5 years ago with MS, but it's worse than usual, at the moment. Hopefully, they can prescribe something to help with this issue after seeing me. I'm having alot of difficulty moving around. Thanks for the video.
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Gibby! I hope you're doing well! Hopefully the MS hug is getting better for you! Thank you for writing!!
@diannerodriguez1387
@diannerodriguez1387 4 жыл бұрын
This past weekend I had what may be considered the MS hug. I was driving and at least two hours from home. I pulled over, unbuttoned my jeans and unhooked my bra thinking it was because something may be too tight. But the symptoms just increased until I felt like I was being squeezed around my rib cage and numbness spread across my chest, back, down both arms to the wrists, down my abdomen and into my thighs. Later it spread up my neck to the top of my head and in my cheeks. I pulled over and called an ambulance and was taken to the nearest ER. Lab work showed a low potassium and they ordered MRI’s without and with contrast of my brain, neck and spine. Once I told them I had an appointment scheduled with a Neurologist but just hadn’t been to see him yet it was like they shut down. The ER doctor I spoke to first kept inadvertently saying MS but after shift change and I got a different Dr. I felt he was holding something back and just told me to make sure I kept my appointment with the neurologist. I’m trying not to freak out. I know several people with MS and they are leading fairly normal lives. But I am still a little scared.
@rifeynman
@rifeynman Жыл бұрын
How are you doing now? Did you get any answers?
@robertamitsules4301
@robertamitsules4301 4 жыл бұрын
Hi Lauren, Is it possible for you to send me a picture of shoe insert you had made ? My drop foot is getting worst I try so many afo. I hoping maybe something you had made I can find someone around here in WA . Thank you
@nicki1739
@nicki1739 4 жыл бұрын
Hi Lauren. I’m wondering- when you were walking do you think you twisted your back? I’m not saying it doesn’t sound like an ms hug because it does. I’m just wondering-and this is how MY mind works- if there is another explanation. It’s good that it went away quickly, so it was certainly not a flare. Sometimes as I’m sure you know we get pseudo-exacerbations when we exert ourselves. If it is the hug and related to ms, it was too short to be a flare. May I say, Ocrevus rocks! I’m glad you’re back. I missed hearing from you. Nicki You asked if we, your viewers, had any experience. I do. I have a “gentle?” hug around my front rib cage, and strangely enough one around my lower thighs and one around the balls of my feet since my last flare about a year and a half ago. Glad it’s gentle or I’d be screaming for drugs. 👩🏻
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Nicki! I don't think I twisted my back when I was walking...I could have but I don't think so. Yeah, I don't think it was a flare or pseudo exascerbation...I've had those before! And yes, Ocrevus totally rocks!! Thank you for telling me about your experience! I'm so glad that your hugs are "gentle"! I wish you the best with everything!!
@hazmughal8676
@hazmughal8676 4 жыл бұрын
Hello Lauren, Love you're videos. I dont think I can recall having ms hug sorry, I have followed your videos since 2009 just never had the confidence to talk about ms and all. How is ocrevus working for you??? Im thinking of changing from tysabri aswell. Thanks
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hello Haz! Thank you so much for saying that about my videos! Yeah, I think it was the MS Hug, but who knows? Ocrevus is working great!! It has been an amazing experience! I'm very grateful! I would definitely talk to your doctor about it!! I wish you the best with everything!! Take care Lauren
@hazmughal8676
@hazmughal8676 4 жыл бұрын
@@LaurenParrott Thanks for the response, I have a question as you have had ms for so many years, do you think on top of taking medication exercise can make ms symptoms better ??? Thanks
@StephenChad24
@StephenChad24 4 жыл бұрын
I have the MS hug in the form of chest pain, and it has freaked me out to the point I got multiple EKGs done. It happens above and to the left of where my heart is. I've talked to others where they felt like it was harder to breathe and some say it felt like a belt was tight around their waist. So there are different forms of the MS hug apparently.
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Stephen! Thank you for telling me this! I'm so glad you said there are different forms! That makes sense...I think over 20 years, I've had some forms of the MS Hug! Thanks so much for sharing!!
@poke_wounds9175
@poke_wounds9175 3 жыл бұрын
Hi Lauren, just Subbed to your channel, great content and I have been looking into making my own channel about ms and mental health as they are both things I deal with on a daily basis. I know this video is old but I wanted to say I have had ms for 20 years as well and I have experienced the ms hug multiple times but not in a couple years. The first couple of times I got it, it was very similar to what you describe in that I all of a sudden had shortness of breath and tightness in my chest but it wouldn't last long. One night though in 2015 I believe it started to happen but it kept getting worse to the point where I felt like every breath I was taking was the last one I was going to get be able to get out. I know that's not the easiest thing to describe but basically, my mind was telling me 0you can only take one more breathe in, and then you are going to choke to death even though I was able to keep breathing. It was very labored and my anxiety went into full gear which made it even worse and every time I inhaled or exhaled I mentally and physically felt like I wasn't going to be able to expand my chest to take more air in. This was at night and I woke my (at the time) wife up and tried explaining it to her while it was getting worse and I made a quick decision to have her call an ambulance because I was freaking out. I went to the hospital and of course, ER doctors know little to nothing about ms so that didn't do much good and it ended up subsiding on Its own while I was at the hospital in a room lying on a bed. I have never had the MS hug that bad again but have had little ones now and then but It's been a while now so I am hoping that lesion healed for the time being. It definitely sounds like it is what you had though and I am glad you got through it okay.
@LaurenParrott
@LaurenParrott 3 жыл бұрын
Thank you so much for writing! I really appreciate your description of the experience you had. It helped me a lot. I hope you are doing well!!
@chinwendutony3326
@chinwendutony3326 3 жыл бұрын
Hey @Josh Hoffner how are you today?
@poke_wounds9175
@poke_wounds9175 3 жыл бұрын
@@chinwendutony3326 pretty good, I have my daughter for the whole Christmas break and I feel decent today. You?
@poke_wounds9175
@poke_wounds9175 3 жыл бұрын
@@LaurenParrott thanks Lauren, I'm glad it never came back that bad again especially with all the other havoc ms is inflicting upon me. I hope you're well. Keep making videos!
@chinwendutony3326
@chinwendutony3326 3 жыл бұрын
@Josh Hoffner I am ok.I am actually undiagnosed but I have some scary symptoms.But please I would really like to know if you still walk on your own cos I read you have had it for 21years old now.
@JoshuaBagwell
@JoshuaBagwell 4 жыл бұрын
Have you made a video about dating with ms or how someone who is interested in someone with it should know to be better at being a good person to the ms person
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hey Joshua! I haven't made a video about dating but that is something that I definitely will! It's really important for patients AND their partners to have the best information possible! Thank you so much for your suggestion!
@JoshuaBagwell
@JoshuaBagwell 4 жыл бұрын
Thanks i know for me dating with my health issues became to much. Women feeling sorry but saying yeah i don't want to date someone with health issues. So i for one started looking for people like me and want to learn more about others conditions and how to be the best supportive friend and more to them
@user-xp5zw2mq8s
@user-xp5zw2mq8s 10 ай бұрын
Hi, I'm staying up too late learning more and more about ms. When my mom and dad were here to visit last April, I was having my first bout of ms and I was tripping and falling a lot, had profound weakness in my legs and was generally exhausted. As if that wasn't bad enough, I got what I think was an ms hug. I wasn't very self-aware at the time bc ms is new to me, so I assumed it was really bad gas or indigestion. Tums and Milk of Mag weren't doing a thing to relieve it. It never once dawned on me it could be anything else, especially since I'm always constipated. The tight, sharp pangs were over my entire abdomen and shot up into my shoulders. I was also short of breath, and inhaling deeper made the pains even worse. I had not seen my parents for a few years and they were only here for a long weekend so I skipped the rest I probably needed and kept carrying on as best I could. I actually wore a loose, flowy dress out to dinner so that I wouldn't have a waist band digging into me and making me feel more miserable. I barely touched what I ordered at the restaurant and I passed on ice cream after our meal--this is very unusual for me! This horrible episode lasted into the next day before it finally started to subside. Is it safe to say I was having an ms hug or do you think it was gas like I originally thought? Any responses from the host of the video or others on here participating, please,---I'm new to this and want all the info and personal ms experiences I can get. Thank you and God bless.
@LaurenParrott
@LaurenParrott 10 ай бұрын
Hey! I'm sorry you've had to experience this. Constipation can disrupt daily living. I know because I have it as well. I learned from my doctor that with MS patients, the muscles in our large intestine aren't working like healthy people. What I do is rub my stomach and push stool around..you can feel it. I also drink water and coffee to help move things around. I use a Squatty Potty and that helps as well. I eat lentil soup and that also helps. I don't think you were having an MS hug, but I could be wrong. It's also important to move your body...exercise, daily chores that you're capable of doing, whatever will get your body moving. I wish you the best!! Please write if you have any more questions!
@luvacav
@luvacav 4 жыл бұрын
What kind of creep would vote thumbs down? They need Jesus. Love you Lauren! ❤️
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Suzanne! I'm not sure? Love you so much! ❤️
@zinniazen9923
@zinniazen9923 2 жыл бұрын
Hi I know this is 2020 but now 2022! I have been experiencing these symptoms as well for the last 20 years. I have been dismissed by three Nero drs. By my symptoms and two drs. I had several mri o the brain but no spinal. I been dealing with this hug pain of an on it woke me up early in the morning often. It comes on out of the blue and can last up for an hour or two. Drs have not been able to diagnosis me. It’s so frustrating. I have horrible balance issues and tremors. Along with everything else. After an ms hug attack I get so tired and been known to sleep for two days afterwards. The adrenaline rush with pain is extremely painful. I have found out ways to cope using a magic heat bean bag and a cup of green tea with honey. By the time I finish my cup of tea the pain disappears. It’s the only thing that works. As soon as the pain starts I put the kettle on. Something about the heat of the hot water eases the muscle spasms. I don’t know if I will ever get a diagnosis but this helps.
@LaurenParrott
@LaurenParrott 2 жыл бұрын
Hi Zinnia! Oh mmy gosh, so you really know what I'm talking about! I can't believe you have been dismissed by 3 neuros. Wow, it lasts longer than what I've experienced. I'm so glad you found a drink that helps! I know that getting a spinal tap will definitely give you more information, and maybe neuros will listen. I wish you the best!!
@Bay-BGhost
@Bay-BGhost 3 жыл бұрын
I have been diagnosed since I was 24 I am now 45. I have experienced the MS hug one time and it sounded just like what you described except mine lasted for 2 full days. it was awful.
@LaurenParrott
@LaurenParrott 3 жыл бұрын
Hey Jen! I'm so sorry that you had that experience for 2 full days!! It's nice to hear that I'm not crazy though...I wasn't sure what was happening. I hope you are doing well!
@chinwendutony3326
@chinwendutony3326 3 жыл бұрын
Hey @Jen Kasper how are you today?
@megd7593
@megd7593 4 жыл бұрын
This sounds like the HUG to me. I have it to varying degrees all the time. It feels like I’m wearing a corset. Some days it’s not too bad; some days it makes me breathless. Mine is usually on mostly my back and flanks, but can definitely wrap all the way around my torso. Laughing really hard or crying can make it so much more painful. During a flare, it seemed to sort of cause my intercostal muscles (the muscles between the ribs) to spasm and tighten. This was scary and painful and caused me to have a panic attack, because it literally felt like I couldn’t breathe. I’ve since learned that when the hug gets too tight, I MUST lie down. Sometimes I have to take muscle relaxers to make it let go. Most importantly of all, I’ve learned that staying calm is the best thing to do. I hope this helps!
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hi Megan! Thank you so much for your comment!! I've learned that rest and staying calm is definitely the most important thing to do. I truly appreciate your comment!! Wishing you the best!!
@hattiedraper1061
@hattiedraper1061 3 жыл бұрын
Meg’s description of how it feels is just like mine - except that during periods when it’s at its worst I have to AVOID lying down which makes the pain and the pressure even worse.
@anaheimskip
@anaheimskip 4 жыл бұрын
I deal with the MS hug all the time. It’s like someone comes up from behind and just starts squeezing you. It gives me breathing issues. It messes up my speech. It causes spasms, tremors, and sometimes makes me look like I am having seizure. It’s downright awful. Can’t stand it. Pretty much ruins my day completely. I have primary progressive MS. Such a hideous disease.
@dangerboy1111
@dangerboy1111 4 жыл бұрын
possible its demonic or spirit attachment, because i have this issue
@daniellegage9888
@daniellegage9888 4 жыл бұрын
It could be a MS hug. However, the only time that I have been truly breathless is when I had tonic spasms...that have subsided since June THANK GOD!
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Yeah my experience was minor...maybe a MS Hug, maybe not. I'm so glad your tonic spasms have subsided!! I hope you are doing well!
@goodolboy5228
@goodolboy5228 4 жыл бұрын
Have you tried Epsom Salt baths? loaded with magnesium . Or eat pumpkin seeds daily or spinach Nuts.com
@LaurenParrott
@LaurenParrott 4 жыл бұрын
I have't done that! I should try!! Thanks for the recommendation!
@goodolboy5228
@goodolboy5228 4 жыл бұрын
@@LaurenParrott If your skin is sensitive because of the MS you might want to use 1 cup instead of 2 per bathor just stick to pumpkin seeds and spinach.
@amandaleahspears
@amandaleahspears 3 жыл бұрын
Happened to me last year. I'm not diagnosed with ms but I am diagnosed with small fiber neuropathy and MGUS
@LaurenParrott
@LaurenParrott 3 жыл бұрын
I'm sorry you have that diagnosis...it's not fun is it?
@jessicawilson784
@jessicawilson784 3 жыл бұрын
I have had a MS hug before and mine lasted 6 weeks ... it was not short and I had intense pain and burning around my chest ... come to fine out I had an attack in my spinal cord ... it was the worse thing I have every experienced and would not wish it on an one... It felt to me like I was being hugged by hot rebar
@LaurenParrott
@LaurenParrott 3 жыл бұрын
Hey Jessica! I'm so sorry you experienced that. I hope everything is better now!
@myMSsince2004
@myMSsince2004 4 жыл бұрын
20 years???? Were you diagnosed when you were 5? ;-)
@LaurenParrott
@LaurenParrott 4 жыл бұрын
Hey Gene!! Aww you are so sweet! I hope you are doing well!!
@goodolboy5228
@goodolboy5228 4 жыл бұрын
Check out 'Top Sante Magazine' channel. 'Vitamin C: the ultimate anti-ageing supplement' They discuss water and fat soluble forms of vit c and how it can help with different ailments, including MS.
@Gabriellabonanno
@Gabriellabonanno 3 жыл бұрын
You are normal doesn't matter how you walk
@LaurenParrott
@LaurenParrott 3 жыл бұрын
Aww thank you! I wish everyone felt the same way you do!!
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